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'Patient-Friendly' Thoughts from a 16-Year Myeloma Survivor

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If you're a caregiver, I'm sure one of your main concerns is learning about the latest and greatest in the myeloma research/treatment world.  Interpreting all of this information can be a challenge.
In one of my first posts on this blog I talked about what I look for when reviewing research information from the American Society of Hematology (ASH).

Today, I'm going to introduce you to someone who does a really good job of understanding the data.

Years ago, Michael and I attended the annual meeting of ASH with another myeloma patient and good friend, Jack Aiello.  Jack was diagnosed with multiple myeloma in January of 1995. Yes, you read correctly, 1995, which means he is a 16-year survivor.
We also had the opportunity to attend ASH again this year in Orlando, Florida with Jack.  His perspective on these meetings is fresh and "patient friendly," and Jack is allowing me to share with you his thoughts.

Myeloma Highlights from ASH According to Jack (definitely not medically trained)
This is the fifth year I've attended ASH. I typically focus on the Clinical Trials, which I'm able to understand and are more relevant near-term to patients

During the last couple of years at ASH there have been many reports on response rates to combination therapies, which typically include the novel drugs Revlimid, Velcade, and/or Thalidomide; the effectiveness dosage reductions; whether maintenance treatment might increase overall survival; and, of course, the results of new drug therapy.
This year provided more encouraging data results for many of these regimens. Last year was the first time I'd ever heard 100% ORR* response rate for newly diagnosed patients in a trial with RVd.  And this year I heard it twice in trials with VdC-mod and CfzRd. Maintenance treatment with or without a preceding transplant using lower doses of Revlimid, Velcade or Thalidomide all improve PFS, but it's too soon to know if OS is extended.
Some transplants regimens show seven-year median survival rates and are considered a treatment option for transplant eligible patients.  Will novel therapy treatment surpass transplant efficacy?  It's just too soon to tell.

A Few Comments I Found Provocative

  • A panel of experts was asked "How important is CR for a non-transplant patient"?  Answers "Important for OS"-D. Roodman; "Yes, but be mindful of toxicities"-N.Raje; "The goal is to always get the best possible response"- J. Kaufman; "We see durable PR's." C. Farber. An observational trial Vd vs V-only showed better responses for Vd but similar TTP & OS. [Sun-3027]
  • If PET-CT scan shows spine lesion, should follow with an MRI to further quantify." S. Jagannath
  • "Although maintenance has shown longer PFS, we cannot change the OS metric as a means to validate treatment." S. Rajkumar; "Maintenance therapy is effective and likely to be with us for a long time." G Morgan
  • "For relapsed MM patients, I look at Disease-related (e.g. response duration, cytogentics), Regimen-related (e.g. prior drug experience, dosage mode) and Patient-related (e.g. pre-existing toxicities such as PN, age) factors before determining next treatment." For example, using current drugs, if patient's MM is indolent, slow and first relapse, I'll suggest Rev if initial tx was Velcade & visa-versa, or a transplant if at least 18-24 mos remission from prior transplant.  If the patient's MM is aggressive, rapid and has had several relapses, I'll suggest DCEP or DTPACE chemos or VR combo's or perhaps a transplant, which can give quick control but is likely to have a short-lived response." S. Lonial
  • At ASH2010 there are 300 abstracts on new MM drugs and combination therapies, including IMIDs: Pomalidomide; Protesome Inhibitors: Carfilzomib, CEP18770, NPI-0052; HDAC Inhibitors:Panobinostat, Vorinostat, Tubacin; PI3K/Akt Pathway inhibitor: Perifosine; KSP Inhibitor: ARRY-520; CDK4/6 Inhibitor: PD 0332991; mTOR Inhibitors: Temsirolimus, RAD001; Monoclonal Antibodies: Elotuzumab, CNTO328, Milatuzumab. S. Lonial
  • "Carfilzomib is incredible." D. Siegel  [Onyx hopes to go to FDA summer 2011 for approval.] Both Onyx and Millennium are working on oral versions of proteasome inhibitors.
  • "The 5-yr PFS is 100% for R consolidation and maintenance so I'm beginning to think some of these pts might be cured." M. Attal
  • New IFM/DCFI 2009 study: RVd*3, hvst, SCT, RVd*2, Rx18 mos vsRVd*3, hvst, RVd*5, Rx18mos (SCT@relapse).
  • When one of the Pomalidomide studies showed Pom given 21 of 28 days worked as well as 28 of 28, a question from the audience asked "Why not 14 of 28?"

*For a definition of acronyms go to this glossary.

Thanks, Jack!

To hear direct clinical trial updates from the investigators go to the IMF website and click on webcasts www.myeloma.org.  And don't forget that on Thursday, Jan. 13, the IMF presents a teleconference, "Best of ASH - What Myeloma Patients Need to Know," with Dr. Brian Durie and featuring a Q&A.

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